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Wednesday, January 30, 2013

I'm not sure when the last time I wrote about Samantha was. I know it was before we moved into our new house, so she, too, has had 2 birthdays that I have yet to write about. She's had a lot going on in the last 18 months or so. A lot of it is about her gait issues, so this post will be all about that...then I'll actually work on catching up with the rest of her goings on in a second post.

In the summer of 2011, she started having a little trouble walking occassionally. She could not walk fast at all and she was sort of limping while she walked slowly. Running was impossible. We were at the doctor's office for Jacob's 18 month visit the first time I noticed it. The nurse asked her about it and we thought it was probably because of the ingrown toenail she had. The doctor gave me some tips on how to keep her toenails from becoming ingrown since, at the time, she got them fairly frequently. She got better for a while. And then it came back. And it was worse. But this time she didn't have an ingrown toenail. This kept going for a few months until it got to the point that it no longer stopped. She couldn't run. She couldn't walk fast. She couldn't keep up with her friends at the park. She did come up with a way to sort of run, by swinging her leg way out. I was starting to get very concerned.

I asked Samantha's doctor about it when we went for her well check in January, but she walked with exaggerated care for him so he didn't see what I was talking about. He assummed that it was just something she picked up because of having ingrown toenails so much. After that, I asked Leslie, who is a pediatric nurse, what she thought about it. She wasn't sure what I was talking about. But then when we were at the Lindley's house a few days later, she saw it. She asked if that was what I was talking about and she was extremely concerned. She was so concerned that the next morning she called me a couple of times and left messages when I didn't answer, called her kid's pediatrician in Temple to describe the gait to him and ask his advice, and walked over to my house to talk to me about it some more, all by 8:30 in the morning. She asked to see Samantha trying to run again, so we all went outside to play. She took this video for me, and sent a copy to her peditrician. Her pediatrician advised going to the ER in Temple so that we could get into see a pediatric neurologist without having to wait potentially months to get an appointment. I took the video to Samantha's doctor. The next day our doctor called me back as soon as he had seen the video. He said, "She wasn't doing that in the office, was she?" And I told him that she wasn't because she was walking very slowly and carefully, putting one foot directly in front of the other, kind of like walking a line, but that as soon as we left, she was doing it again. He was very concerned and the next day we had an appointment with a pediatric orthopedist for the following week.

First we saw a nurse practioner. She checked for joint problems. She checked for a difference in the length of her legs. She did x-rays. She did everything she could think of that day and couldn't come up with what was causing the problem. So she sent us for an MRI and ordered some bloodwork. They did a full spinal MRI, from the neck down. They didn't see any joint problems. There was no spinal tumor. There was no evidence of rheumatoid arthritis. She sent us to her supervising doctor. He reviewed the tests and ordered some additional bloodwork. He still couldn't find any problems.

Jacob's ECI team told me about a client they had previously, who had an issue with his muscle and bone growing at different rates. They thought that Samantha's gait looked similar and Grace thought that Samantha's right leg felt very tight. They recommended that I look into that possibility. They said that it did not show up in an MRI, that it was diagnosed by PT evaluation and that it was treated by PT. They said that it was important to see a pediatric PT, though, because otherwise the therapist would probably not be familiar with issues like that.

So I asked the doctor to send us to PT instead of asking to be sent to a neurologist. Our PCP said that he would be OK with that, but that he wanted to talk to the orthopedist first to make sure they were on the same page. I called every month to ask about it and got the same answer each time.

In the meantime, Samantha started ballet midway through February, and then, right around Easter, Samantha got much better. She even noticed herself. The week before Easter she told me, "Mommy look! I can run normal!" as she ran down the hallway with no difficulty, no limp and no gait problems. That improvement lasted a couple of weeks before the problems started creeping back in.

Finally, we were in the doctor's office in May or June for something else and I asked again. He called again while I waited in the office. Finally we got the OK to start PT.

Samantha had her PT evaluation in the middle of June and started PT twice a week the third week of June. She had a lot of milestones that she was not meeting. We worked on her balance, on standing on one leg at a time, on walking on a balance beam, on galloping and skipping and on walking up and down stairs with one foot on each step. She made a lot of improvement, she accomplished almost all the milestones that she had been behind on. But her gait was still bad. A little better, but still not normal. She moved to once a week PT in the middle of July and then had her last day of PT on Thursday, July 26.

But that Monday (7/23) she had started walking a lot worse again. And then she started eating a lot on Wednesday (7/25). When I told her PT assistant about that during her last session, he said that it could possibly be tied to her growth after all, and that the abnormal gait could be a way for her to compensate for growing pains (which she has not complained of) or for her balance and agility being thrown off by her growth. He did say that he thought that we should go back to the doctor, that if it was his child he would do so. And I was glad to have a professional agree with me.

I tried to talk about more testing, but it didn't happen. And quite honestly, I was tired of fighting and Samantha was tired of going to the doctor. So I decided that I would give it a break and just keep track of when her gait worsens and when she eats more and that I would track her growth every month. So far, increased gait issues and increased eating have coincided each time. But I think that I need to track her growth at smaller intervals...at least biweekly, so that is what I have started doing now. I figure that if it does show to be tied to growth spurts, then we have nothing else to worry about, with the exception of possibly doing PT again. And if it doesn't, then I have something to show the doctor to say that we really need to be looking at what is causing this issue. So that's where we are right now. Just watching and reminding her about her PT exercises when she starts having a hard time again. And she does do much better than before. And she can keep up with her friends now. And that makes us both smile.

Jacob started speech services with ECI right around his second birthday. At that time he had 5 spoken words and about 15 signs. He didn't talk very much at all. Then Grace and Diane came into our lives and helped us encourage Jacob to speak more. And to work at speaking better. And he blossomed! By May he had over 100 spoken words and I stopped counting in June. By then he rarely used short phrases (1 or 2 words) any longer, but instead spoke sentences of 6 or more words most of the time. I was amazed at his progress. His ECI team was as well. They said that they don't recall having a client make so much progress in such a short amount of time. I am grateful for their advice and help, which helped us to encourage Jacob to be more verbal. He had his last ECI visit the week prior to his 3rd birthday (they can only work with a client and family up to the day before the 3rd birthday) but they did make a referral to the school district for speech evaluation. He again qualified for services, so we go to the elementary school for speech every Monday morning now.
He had swimming lessons for the first time in June 2012. I already decided that he needed them, but when I had to jump in a friend's pool, fully clothed, in April, swim lessons became a done deal. And he did very well. He can't swim on his own, but he can kick, put his face in the water and blow bubbles all at the same time. I hope to have him in lessons again in the next month or 2 so that he will have a head start on the summer.

At three years old, Jacob weighs 40 pounds and is 41" tall. He wears size 11.5W shoes. Mr. Puppy is still his favorite, but he CAN sleep without Mr. Puppy if he is missing or has to take a bath. He is VERY happy when Mr. Puppy is back in his arms, though. He likes to play Candy Land, Chutes and Ladders, Uno Moo and Uno Choo Choo. He plays pretend games with his big sister all the time. He loves playdoh, crayons and paint. He hasn't eaten any crayons in at least 6 months...yes that is a big accomplishment! He knows how to use scissors. He can count to five and understands what five of something is. He knows other numbers but doesn't get them in order. He recognizes some written numbers, but doesn't really care about telling me which ones he knows, so I don't know how many he actually knows. Same with letters. He knows a few, but getting him to point them out is a real challenge.

He is concerned when other people are sad and notices when other people are not being safe...such as not wearing a helmet when bike riding. He loves to ride his bike and tricycle, but doesn't get the whole pedalling idea. He asks to be pushed or he will push with his feet on the ground, instead. He tells me about his friends all the time, especially Ellis. He asks where Mrs, Carla is every time we drive by her house (and since that's across the street, that's all the time!) He thinks that he is just as big as his sister and her friends and DOES NOT like to be told that he isn't big enough to do something. Unless it has to do with going potty. Then he tells me, "Me NOT big boy. Me little boy." He knows that big boys use the potty and he just doesn't want to do that. Sigh. Been there done that, but in the end, he will be potty trained, just like his big sister was.

He refuses to refer to himself as "I." When I corrected him about it a couple of months ago, the conversation went something like this:

J: Me want that book.

Me: You mean, I want that book.

J: That what me said.

Me: No, baby. When you are talking about yourself, you say I. So Jacob should say I want that book.

J: But me want that book. Not you, not Danta (Samantha), ME want that book.

So he is absolutely convinced that "I" refers to anyone except himself. Once again...he'll get it eventually.

He has definitely developed opinions and has learned the fine art of the temper tantrum. What can I say? He's 3.

He still loves to snuggle and I love to have him climb into my lap for cuddles and kisses. He sings along with me and with Samantha, but his signing is usually repeating the first 5 or so words over and over and over while Samantha and I finish the rest of the song.

He is my sweet baby boy...no matter how often he tells me that he is NOT a baby boy, he is a big boy. I wouldn't trade him for anything. I am so grateful that God chose him for me.

Thursday, January 17, 2013

Hello again. Somehow I managed to do a million things other than record our lives here. And my poor children's scrapbooks will be much sparser as a result. I hope to do better, But I make no guarantees.

So basically, I've missed the last year and a half. My kids have both had 2 birthdays with no word from me, and quite honestly, I don't really remember enough of what was happening a year ago to accurately report it. There are a few things I can accurately recall. Samantha started dance (ballet and tap) in February 2012 and started preschool in August 2012. I finally called ECI in November 2011 and Jacob started services with them right around his 2nd birthday. We moved into our new house in Oct 2011 and started getting to know our wonderful neighbors. After years of saying I was going to, I finally got a vegetable garden started. We have made wonderful new friends. I was director of our church's VBS for the first time in June 2012 and we started a Storytime with Santa this past December that we plan to have each year. We have stayed busy. We have grown. We are loving our life and each other.

And at least for the sake of memories and the kids' scrapbooks (and for my mom), I will try to blog a little more. We'll see what happens.